Stepping Up to HIV Stigma in the U.S. South

Monica Johnson is from the small town of Columbia, Louisiana, but you may recognize her from the gripping HIV-focused documentary deepsouth. Her organization, HEROES, like many other small and struggling rural agencies, serves people living with HIV who might otherwise not have anywhere else to go.

After Monica became HIV positive through a blood transfusion in the early 1980s, she gave birth to an HIV-positive baby boy who passed away at a young age. Throughout his life and hers, she has faced the gamut of HIV stigma: Her son was asked not to attend school with other children, and Monica was asked to leave her town. She told them she wouldn't go.

As Monica herself puts it: "My glass is always half full": Not only did she stay put in Louisiana, she advocates for other Louisianans who are living with HIV. Her organization operates on a shoestring budget, and she knows how to make the best of HIV care when there is no infectious disease specialist even within a few hours' drive.

This interview was conducted in October 2012.

Inspiring stories of people living with HIV.

Can you talk a little bit about how you found out you were HIV positive, and what year it was?

I received a blood transfusion in 1984. And in I want to say 1985, 1986, I received a letter from the blood center, saying the person whose blood I received had died from AIDS, and they asked me to be retested. I think it was '85.

I was retested and the test was inconclusive. I was in school, doing my thing; so I didn't retest again. I was, like, "OK, cool. Not me."

Inconclusive, meaning?

They didn't give me a yes or no. And so in 1990, I was pregnant with my son. I told my doctor what happened with the first inconclusive test. She retested me, and the test came back positive.

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What did you think, and how did you feel, when you first heard the news?

Well, at that point, I really didn't have a lot of time to think about me. It was, like, choices laid out about my baby: What should I do? Because it was early on -- there was no treatment, really -- it was like, "Do you want to abort? " She never said I had to. And my doctor was really supportive, so she never even recommended that I abort. But there were other people in her office, the counselors, who said, "You know, you really should think about abortion." I was thinking about what I needed to do for my baby at that point.

What did you end up doing?

I had my baby. He was born in April, Easter Sunday, 1990. So it was '89 when I found out I was pregnant. Because he was born in April of '90.

Well, for the first six months of his life, he was very, very, very healthy. He stayed on the growth chart and, you know, the little curves; he was right on target. And right at about 6, 7 months, when he started developing his own immune system, he started getting sick. And they sent him to my pediatrician, who I love, still, today; sent him to New Orleans -- because at that time, New Orleans still had a leper colony; I mean, just for study purposes. So they took him down there; they drew blood; sent it there. And they told us maybe the week before Christmas that he would develop AIDS and probably wouldn't live to be 1 year old.

How did you feel when you first heard that news?

At that point, I was like; I cried for a little minute. And then I came up with a game plan. We took pictures every day. We did birthday parties. We were doing our lifetime worth of stuff in the next six months. Because Easter was going to be in April; this was December. We was trying to get everything out.

What was your baby like?

Oh. Oh, he always smiled. Always, always. He was very happy. Always, always, always, always smiling, even when he was in pain. I've thought about that, because I've never really been sick -- I have gone to the hospital one time, but I've never really been sick -- but I just think they've put a man on the moon; I don't think anything on me should hurt. So I need to tell my doctors, "You need to work it out. I don't think nothing on me should hurt."

He never really verbally communicated, but a couple of times, he had kidney stones. My doctor said that was the extreme, extreme, extreme of pain. He would cry, but he still smiled through that. You know, he just always smiled. I'm like, that ain't the creed I'm cut from. I want something! So he was extremely happy.

Was it at some point during his life that you started to come to terms with your own diagnosis and think about yourself? Or did that come later?

"'Nos' really fuel me."

No. Well, what happened was, when he was 2 -- in the state of Louisiana, if you have a physical challenge, or something wrong, you're supposed to be able to start school. I think at this point he was not thriving. He had fallen off the growth chart, and he had lost weight. You know, he looked, not sickly, but he was sick. And the doctor, his pediatrician, started trying to get him into the special-needs school, so he could start the educational process. And the school system where I live said "No." They did not want him to come to school. He could not come to school there, even when he turned 3. And "Nos" really fuel me.

So at this point: "Why can't he come? I want him to have everything everybody else gets." And so then anger kicked in, and so I started advocating on his behalf then. And I advocated on his behalf until he died. And then, when he died, I had about maybe about a six-month grace period. And I started thinking.

Well, no. What happened was, a friend of mine had a baby. And her baby was not infected. She was. And the school system was just not doing her right, because somebody had found out. And I started advocating. And I said, "I wonder how many times this happened to other people?" And they just don't want to say anything. So that's how it started.

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